Not Fade Away: A Memoir of Senses Lost and Found

by Rebecca Alexander

  I got a call from Ruth, a woman with the California Department of Rehabilitation, who was calling to set up an appointment to come to my house for my first Braille lesson. While I had never seen her, I was sure, as soon as I heard her voice, that she was blind. Her speech felt too exuberant, somehow socially awkward, and almost cartoonish. I hated that this was the first thing that came to mind when speaking to Ruth on the phone, and that I didn’t feel—or sound—as enthusiastic about meeting her and learning Braille as she seemed to be about teaching me, that I was already recoiling from this kind-sounding, cheerful woman. As she chatted on, telling me what the lesson would entail and arranging a time for us, my mind wandered, her Disneylike voice bringing me into a dreamlike state, where I imagined the two of us standing at the gates of a children’s theme park. I pictured her in pigtails with large red bows, handing me a great big rainbow-colored lollipop, opening the gates, and singsonging, “Hello, Rebecca! Welcome to Blind Land. Just take my hand and I’ll show you the way!”

  I shuddered and came back to the sound of Ruth’s voice, knowing that there was no way I was going to walk through those gates, imaginary or otherwise. I spoke to her with as much kindness and compassion as I could muster, despising myself but unable to shake the feeling that I was somehow the one doing her the favor. I deceived myself into believing that I was doing some kind of charity work, helping this blind woman feel good about herself, giving her a job. That she was blind, and I was just pretending to be.

  At that time, I hadn’t yet understood what going blind really meant. I couldn’t really recognize how much vision loss I had experienced since my original diagnosis at twelve and still didn’t totally equate that loss with going blind, as crazy as that sounds. I had always interpreted the message that I was going blind as referring to something that was going to happen to me when I grew up, which I certainly hadn’t, and I tried for as little self-reflection as possible on this subject. I still separated my actual self from my diagnosis, too, becoming comfortably detached whenever I had to explain it and how it affected me to people who would ask.

  I met Ruth at the top of our driveway to help her maneuver her way to our house. It was hard enough to find the narrow, snaking path that hid along the side of our neighbors’ driveway; for someone who was blind it would have been close to impossible. As Ruth carefully stepped out of the Access-A-Ride van, I greeted her and extended my upper arm toward her, bending it at the elbow for her to hold on to so that I could guide her. I prided myself on doing this expertly. I’d attended enough Foundation Fighting Blindness conferences and events to know the best way to guide a blind person while walking, and I could sympathize with her condition. Empathy, however, was still far beyond my reach.

  Ruth had been blind since birth. Her eyes were a cloudy color somewhere between white and light blue, and they couldn’t focus. Her left eye veered up and to the right while her right eye seemed to be looking directly toward the sky. It was clear to me that she had never been sighted, and I found myself fascinated by her now that she was in front of me. It was amazing to watch the ways in which she had adapted to a sighted world: the way she spoke and listened, and the way she seemed to trust me absolutely as her guide. The trust seemed to lend her an almost childlike quality, and it made me a little uncomfortable, and even angry for her, that she was forced to trust me to lead her responsibly. It seemed so incredibly unfair and I didn’t know where to direct that frustration, except by making sure that I did my very best to make her feel safe and accommodated.

  I gave Ruth my arm to hold so that she could feel the movement of my body by the way my arm moved, and let her know when there were stairs or exactly what was coming directly ahead of us so that she would not be caught off guard. When we reached the steep stairwell, I told her that there was a railing on her left side that she could hold on to; I counted each step down and gave her forewarning when our last step was approaching. I loved doing this, helping her and feeling needed. I’ve always felt so fulfilled by offering small gestures of help and seeing others do it, and I felt ease and comfort in helping her, which helped distract me from the real reason Ruth was coming to my house that day. After all, I was still the one helping her here.

  My parents had a large, easily excitable Bernese mountain dog named Tally who would bark enthusiastically and hurl her gigantic body at visitors when they arrived. As Ruth and I slowly walked down the second steep flight of stairs into the house, Tally began to bark and dance in circles to welcome us. Ruth laughed, understanding right away that Tally was simply a noisemaker with no interest in harming anyone. Maybe it was because of her acute hearing, extra sensitive because of her blindness, and her ability to hear the nuances of sound that most people miss, that she was able to instantly understand Tally’s bark. It occurred to me then that maybe she had also heard the reticence in my voice, and possibly too the disdain that I didn’t understand or want to feel and knew I didn’t have any right to.

  As we reached the door, Tally approached us and I quickly tried to shoo her away so that Ruth’s path wouldn’t be obstructed. But when Ruth felt the brush of Tally’s tail against her leg she stopped walking and slowly leaned down with her hand extended for Tally to smell. As Tally happily explored her hand, Ruth spoke to her sweetly: “Hello, pretty girl. It’s very nice to meet you.” I thought to myself how ironic it was that Ruth called Tally a “pretty girl,” even though she couldn’t see her and couldn’t possibly know what a dog looked like. What I thought then was that it was just a response that she had learned through hearing it repetitively from others, rather than by personal experience. Now that I’m much closer to where Ruth was, I wonder. What does “pretty” mean when you can’t see? My dog Olive is the most adorable thing in the world to me, but it’s not just her puppy eyes, her lithe, curly-haired body and proud golden tail. It’s her warmth, enthusiasm, and curiosity, her simple doggie radiance. Maybe that’s what “pretty” meant to Ruth. I wish I’d asked her.

  Once we got ourselves settled it became abundantly clear that any thoughts I had had about this being for her benefit were woefully misguided. I was amazed by how effortlessly Ruth’s hands flew over the bumpy white page as she read the Braille directions to me. I watched her face, feeling almost voyeuristic because she couldn’t look back at me. I wondered if she could feel me staring at her. I was so curious about her expressions, her rate of speech, and how keenly alert she seemed. I kept having to remind myself to stop staring rudely and would look back down at the page she was reading, almost as spellbound by her hands as I was by her face.

  When it was my turn to put my hands on the Braille I realized how desensitized my fingers were and how difficult it was to feel the difference between each letter. I have always thought of myself as very tactile, my sense of touch heightened to help compensate for my declining eyes and ears. But after putting my hands on the paper filled with hundreds of words coded by little white bumps, I was humbled. I thought of Helen Keller, who had never read a word or heard one in her living memory, and I felt like an idiot for not realizing what hard work this was going to be.

  When my first lesson in Braille was through, I promised Ruth that I would practice, even though I had a sneaking suspicion that I wouldn’t; after all, I didn’t need to—I could still see. I walked her to the top of both steep stairways and up the cobbled brick driveway to the sidewalk, where she was to be picked up by the Access-A-Ride bus service. Ruth told me that she had let the bus driver know where and when she needed to be picked up, and since I had a doctor’s appointment that I needed to drive myself to, I thanked her and rather unceremoniously left her there.

  When I drove out of the driveway a few minutes later I saw her waiting patiently for the bus to pick her up, and I raised my hand instinctively to wave good-bye, then quickly lowered it as I realized that it was a futile gesture. About an hour later, as I drove home from my appointment and got close to my house, I realized that Ruth was still standing there in the br
ight sun, waiting.

  It wasn’t that I didn’t know what I should do—me, to whom helping others had always come so easily. But I drove right by her, knowing that I was behaving horribly, that I was selfish and ungrateful and committing a huge betrayal, to her and to myself, but unable to help it. I stared at her as I passed, overwhelmed by guilt and sadness. I felt as though I had taken advantage of her—like I was given a glimpse into her life and what it meant to be blind and I’d rejected her and said, “No thanks, this is not for me.” At that time I couldn’t even admire her for who she was or her independence, because I was so horribly afraid of what she represented: my future.

  Sometimes, when I think about the past, there are years that seem to have passed by in mere moments. Those few hours with Ruth, though, seem to have slowed down in my memory, every detail seared into me. I’d give almost anything to go back to that day. To stop and gently take her arm, lead her to my car, and drive her home. To thank her genuinely and ask her the questions that I had been so afraid of at the time. But I didn’t. I never even called her again.

  After Ruth I vowed that I would never, ever let myself behave that way again. That had never been who I was; I had always, always been the one to help and to volunteer, to lend a hand to someone who needed it.

  I had let Ruth down, and I had let myself down. I had come face-to-face with the thing that scared me most in the world, and I had run away, and I was so ashamed of myself. No matter how much good I had tried to do, or how many people I had worked to help, I felt like I had undone it in an instant. Though I didn’t know it at the time, that day fundamentally changed me.

  I never told anyone about it; I was too ashamed. I didn’t learn any Braille that day, either, nor have I really since—though it’s high on the list of things I absolutely must know and do before I am totally blind that I really need to make time for. However, I learned so many other lessons that day, ones that will stay with me forever.

  • • • •

  One of the hardest things for me to accept is how much I now need people’s help, and that I always will, increasingly so as life goes on. Countless people have risen to the task—from a stranger who offers his or her arm to help me across the street to the advocates for the blind and deaf who have taught me to ask for what I need. From my best friends, Caroline and Alan, who can sign and tactile-sign with me, to Peter, who never lets a joke go by without repeating it to make sure that I hear it, to my parents, who have done everything to find ways to help me, to teach me how to help myself, and immersed themselves in the research community. They have all given so much to me, and I need to remember to be grateful for that, to accept that help as the gift that it is and not run up against the walls of my frustration for needing it.

  When a friend who is blind can’t find the coffee sitting on the table in front of her, it feels very natural for me to lead her hand to it. Even when Caroline helps me in the same way I have to try not to flinch: My reaction is to pull my hand away or to say, “I’ve got it, thanks,” uncomfortable and insecure about my need for help. I’ve found, though, that people want to do this; the urge to help others is a basic part of human nature. Not only shouldn’t I deny the people who love me that, I can’t. I need them. I try to remember that they need me, too. Even though I’m the one with the disability, it’s not a one-way street.

  23

  I walked uneasily down the prison corridor, my shoes echoing loudly on the floor, my folder full of painstakingly made pamphlets tucked under my arm. I had already been searched and patted down, and now I was getting catcalls from a group of male prisoners being led down the hallway past me. They raised their shackled hands together to the side of their head, making the universal sign for a telephone, and as soon as I walked by they said, “Call me, baby. I’m in cell four seven one two . . .” My cheeks flushed and I looked down, but before I could get too nervous, or even feel the most tiny bit flattered, I heard them saying the same things to the broad-shouldered, stern-faced, middle-aged female guard walking several feet behind me, as they would to any female who got within calling distance of them.

  I was a senior at Michigan and taking a small upperclassmen seminar called “Women in Prison.” In addition to the academic work, we were required to participate in some way with the inmates or families directly. Some people spent the semester planning the Christmas party for the children and family members of the women who were imprisoned. Others opted to work with some of the children of the incarcerated in an after-school program. What I wanted to do was to work with the inmates themselves. Reading all of the research and studies about these women felt like such a secondhand approach to actually getting to know them, which was what I knew I needed to do if I was going to have a better understanding of what their lives were really like, both behind bars and out on the street.

  I knew I wouldn’t be given access to the prison just to sit around and chat with these women or because I was really interested in getting to know them. So I developed a “health class” to teach at the prison, which would include information about safer sex practices, sexually transmitted diseases, rights for prisoners to medical care, mental health support, and nutrition. I would go into the prison to teach two days a week.

  The large cell block where I would be teaching held about twenty women, though I never saw all of them at once. There was a sleeping area with bunk beds at the very back that was kept dark, and, given my vision and where I was, I didn’t think it would be a good idea for me to wander back there and see if anyone else felt like joining the class. I was given a quick, bored introduction by the guard and then sat down in the main room, a very brightly lit open space with a TV, two tables, and a scattering of chairs. The TV was on, as it always was, and I was competing with Jerry Springer as I began talking to the women. He definitely had the edge. At first, most of the women took little to no interest in my visit. They looked me up and down skeptically and asked a lot of questions, and then, unimpressed with my attempts at professional-sounding answers, their eyes flicked back to Jerry and his parade of outrageous guests. I couldn’t blame them. The lesson plans I had created and printed out for them initially remained in neat stacks in the center of both of the tables. These women didn’t care about going over any more paperwork, and their experience with people coming in and trying to “help” them probably had never come to much good.

  After the first couple of visits, I started to realize that the only time they really focused on me was when I completely focused on them. Not as statistics or students, but as people. When I asked them real, specific questions about their lives and their families. What they really wanted, like most of us, was just to be heard. So instead of teaching, I’d sit down with several women around a table and listen to them talk, and I’d leave each week’s pamphlets on the table for them to look over on their own.

  They’d share their stories about what was happening in their lives before they were incarcerated, how they afforded to live—many through prostitution or selling drugs, or being the middleman for a boyfriend who was selling them. Many of them shared stories about how they had risked their lives and freedom to protect their boyfriends or husbands from getting caught. There were women of all ages—from eighteen to seventy-three—and most of them had children, some grandchildren as well. Some of the kids were already in the foster care system, others had relatives to take care of them. When they talked about their kids I could hear pride in their voices, but also guilt and sadness. Some would meet my eyes but others would look away, telling me that they wanted better lives for their children than they had had, but they seemed to feel helpless in trying to accomplish that. None of them were in prison for the first time.

  It occurred to me then, as it so often has since, how crucial the impact of childhood and family is for all of us. Just about every one of these women had the deck stacked against her from the beginning—being born to a teenage mother, into poverty, or into an abusive family; growing up in
a dangerous neighborhood; and often, all of the above. Listening to their stories woke me up during a time in my life when I felt too self-absorbed and wrapped up in my own issues, and altered my perspective on my own life in a lasting way.

  Yes, it sucked that I was going blind and deaf. But that’s what I was born with, part of what my deck had been stacked with. I was also born into a loving, generous, wacky and wonderful family. A family with its problems and heartbreaks, like all families, but a never-endingly adoring one. I could sit there and call myself lucky.

  By the time my carefully devised course came to an end, one thing was very clear—these women were not interested in learning whatever it was I’d come to teach them, and I had been naive to think that they would be. Most of them didn’t even know that I was there to teach them anything, but they were so desperate to talk and really be listened to that I never felt like I was wasting anybody’s time. In fact, I loved it.

  It was one of the really clarifying times in my life where I realized that listening to other people was a gift that I had, something that I was really good at. Ironic, considering how hard it can be for me to hear, but perhaps not so surprising. Maybe it was the fact that I had to work harder at it that made it so important to me to really be able to hear people. Focusing and giving something my undivided attention in order to be able to really communicate was a necessity for me, and it was a skill that I had honed. In listening I had found a way to help these women, and to help myself.

  I went there with the hope of having an impact on the prisoners’ lives and educating them. I left unsure of whether I’d had any real effect on them at all, but they had an enormous, and lasting, impact on me. I realized that this was the work that I wanted to do. I wanted to listen to people’s stories, and, ultimately, to help them figure out how to rise up from their difficulties and how to recognize and change patterns that weren’t working in their lives. Most of all, though, I wanted to be there to listen to what people needed to say.